Tag Archives: Child Loss

I Don’t Cry For You

Soul Pic

I cry for me.

I wear my smile like a garment.  I take it off each night and carefully fold it up, setting it beside my bed.  I gently pack it into its box.  I wake and lift the lid to check and see if it’s still there.  Every day it is.  I rise, smooth it out, repair the fraying edges and put it on again every morning.  In the solace of the evening I allow myself to feel the weight of my empty arms.  To acknowledge the burden of a heart that will never numb.   To choke with each rise and fall of my chest in every breath I take.   And to smear mascara across my wet cheeks when I blot my eyes. But all day long, I smile.

I cry for me.

Because I miss you.  Because I love you.  Because you’re not here with me, and you never will be again.

In two weeks I’ll be at a conference with most of the children like you who exist in this country.  Families like ours.  Mothers, fathers, children all around who live the life I live.  I will wear my smile.  I will carry my head high.  My clothes, my fingernails, my hair, my eyelashes will be perfect.  I will look “put together”.  I will both laugh and lament.  I will both console and commiserate.  I will not hold those children.  I will be offered the chance to do so with each and every one passed around by mothers who are proud, or worried, or hurting, or desperate to connect who will speak to me and offer but I will not hold their children.  I am scared.  It hurts too much.  I know my limits.  It is the only time my smile would break.

And I would cry for me, because of you.

I cannot let that happen.  I have to be very careful with my smile.  I have to wear it every day.

The 37th Annual NTSAD Family Conference will be held April 16-19, 2015 in Reston, Virginia.  Families will gather from all across the USA and beyond to learn about research, support one another, grieve together, and just to be with those who truly understand what living life with a terminally ill child means, no explanations or apologies necessary.   To learn more, visit: http://www.ntsad.org 


No Words

“You can be amazing you can turn a phrase into a weapon or a drug” -Sara Bareilles, Brave

Words hold power.  The power we assign to them.  We get to decide what they mean, and we can do so on an individual basis.  They can mean one thing to one person and quite another to someone else.  In this situation we’re at risk for our sentiment being lost in translation, so to speak.  Words convey thoughts, feelings, and emotions.  With them we can tell stories and share moments in time.  We can even recall memories and give those meaning as well.  They can also be used to hurt.  Though they may not break your bones the way we’ve been taught that sticks and stones will, sometimes words will hurt you even more.  All the words in the world, all of their uses, meanings, and inferences, and sometimes we can’t seem to find a single one to do us justice.

What do we do when words escape us?  How then do we convey those thoughts and feelings whelming up inside of our hearts and minds?

This week I found myself standing in front of the greeting card section of my local grocery store.  I was there to buy a card to send to a friend.  I wanted her to know I was thinking of her. I wanted her to know I was remembering her son’s life, the anniversary of his birth and subsequent death later that same day.  I wanted her to know he is not forgotten.

I stood there, in front of the cards searching for the right one.  The one to convey my sympathy, unfortunately, my empathy and also comfort to her as well.  There were cards that expressed you were thinking of someone, cards of support, and cards of sympathy for loss of grandparents, parents, spouses…and even pets.  Yes, pets.  But there were no cards for loss of a son or daughter.  Loss of pets, but not of children.


They don’t make cards for that, not that they stock at that store anyway.  They don’t make words for that.  When you lose a parent you are called an orphan.  When you lose a spouse you are called a widow(er).  The very idea of loss of a child in our society is so unthinkable, unimaginable, horrific, and taboo that we do not even have a word for it.  It is literally unspeakable.

Nothing works more efficiently to keep uncomfortable, unenviable, hopefully ignorable pieces of society locked away in the shadows than lack of speech.  And that’s exactly where society wants to keep it, us.  Why?  We’re scary.  We know you want to keep us at bay.  We get it.  We know how daunting it is to talk about, how difficult to imagine, and truthfully, how alarming it is for you to even think to pull us from the shadows and to be forced into the light of knowledge to concede that you look just like us and in further consideration that you could, in fact, be us.  After all, isn’t everyone afraid that if our light were to shine too brightly and you got too close that your wings might melt?

Nothing makes us feel like more of a monster to be hidden from than being expected to exist only in those shadows.

It’s a simple sentiment that means the entire world to parents of lost children; we want to know that you still remember.  We know they are gone.  You will never remind us of that fact.  We live with the scars of their loss every day.  We just want to know that you remember they ever were here in the first place.  Not to make you uncomfortable, not to punish you, or push you away but for our own soul’s soothing.  For our broken heart’s sake.

My child lived.  She was a person.  She mattered. I have thoughts and memories of her that permeate every day of my life.

Sing her name unto my ears and let the beauty and magic of her spirit radiate into my heart and soul.

“Say what you wanna say and let the words fall out, honestly, I wanna see you be brave” – Sara Barelilles, Brave

The Magic Season; A Series of Unexplainable Events

2014 Card

Only twice in my life have I had such an experience.  The kind that leaves you in unexplainable shock-even dismay, yet conversely strangely comforted at the same time.  These experiences have left me questioning the theories of the known world, generally accepted as fact, and pondering the idea of what reality truly means.

Is it relative to time and space?  Is it relative even to your own individual perception?  Can a broader more encompassing scope of the idea of reality even exist, or must it be accepted piece by piece, individually, as to only create an illusion of the idea of reality in each of us?

I find that as time marches on, as I grow and learn, and as I mature the important answers in life seem to always be two steps ahead of wherever you currently are.  To additionally compound the complexity of any given situation, I also tend to find those answers (whenever I’m lucky enough to get one) in hindsight, though I would have been sure they weren’t there before.  Sometimes situations and experiences happen in which the explanation eludes you completely.  And how then do we quantify the incident, but can chalk it up to nothing less than phenomena.

Three years ago I stood at the instant-print machine in the photo department of a local store designing my Christmas cards.  Tapping away at the screen a young boy, I’d say eight or ten, walked up to Miss Elliott and I.  He stared at her quizzically for a moment and then directed his attention to me as he spoke.

“She’s sick isn’t she,” he said.

Caught off guard yet intrigued by his candor, “Yes she is,” I replied as I now looked quizzically back at him.

“She’s going to die soon,” He continued.

Shocked, I looked around.  Who was this kid?  Why was he here all alone? Where were his parents? “Yes, she is dying,” I confirmed to him.

“She won’t be here for very long. She’ll make it through the holidays and past the New Year, but probably not long after that,” he prophesied.

Tears formed in my stinging eyes. I wanted to ask him when, and how he knew this. I wanted him to reveal more information to me. Instead I stood there, paralyzed in some confused state of awe. Before I could say anything more his grandmother walked up.

“I’m sorry my  grandson’s bothering you,” she said as she shuffled him away and kept walking herself. “He’s not right. He says things. Don’t mind him.”

“It’s ok,” I told her. “He wasn’t bothering me, really.”

“I’m sorry,” she repeated, and they walked away before I could say any more.

I wondered so many things. How could such a young child have had the foresight to think something like that? What prompted him to say it? Was he a messenger? And if so, did everyone in his life blindly excuse his differences as just nonsense?  What made his grandmother think he was bothering me?  Even more mysterious, I wondered if he even existed in the world at all outside of this particular interaction. Was it possible he was there solely to speak to me?

I left the store more than a little rattled by my exchange with the Ghost of Christmas Future, and returned home. His prophecy now haunting my thoughts. She would die soon? When? Why? She was doing fine. I kissed her head and head her tight. I stared into her face and cried all night at the thought of losing her. It was, of course the nature of her condition. I had already acknowledged that she was, in fact dying. I just wasn’t ready for it. I knew I never would be.

Christmas came and went, and so did New Year’s. By the end of January, when she was still with us I chalked the would-be prophet’s omen up to my own overindulged imagination and put it behind me,  that is until February 3rd, when she passed away.

As I sit here today I think about this experience so often, and know that even now, even in hindsight, I still can’t explain it. I’ve decided that this, like so many other things in life, I won’t have an answer to in this world, and I’m okay with that. Perhaps the answer isn’t what’s important. Perhaps it’s what I, what we all make of the experience itself.

Three Long Years

We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away.  A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.

I worry about that time.  I worry about her memory.  To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them.  She is alive in my heart and soul.  She is imprinted onto my being.  I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.

“Serenely I could while away the hours.  Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet.  This was our life, the one we share.  It didn’t look exceptionally pretty to others.  It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult.  No one coveted it.  I kept it close, as close as I could, for as long as I could.  No matter how unattractive this life was to others, it was mine and it was my most prized possession.”

-excerpt from Three Short Years: Life Lessons in the Death of my Child

It’s been just over a year since I published Miss Elliott’s book.  I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here.  She taught me so much about life itself.  I am eternally grateful to have had the opportunity to be her mother.

To get your copy of Three Short Years, and learn more about Miss Elliott’s life and our journey with her, click here: